Knox 2016-2018
Arlington, Texas
Written by Tim English
Unexpected; a word used as an adjective, meaning not expected or regarded as likely to happen. So you could say that having a flat tire on the way to work is unexpected. Getting a paycheck without having to go to work is unexpected. At this point as sad as it is to say, the Cowboys winning the Superbowl anytime soon is unexpected.
Over the past 2.5 years our journey really taught me about the unexpected.
On February 14, 2016 I can still remember the morning that our precious baby boy changed our lives. The nurse that morning told Brooke and I that I would be able to cut the umbilical cord when Knox arrived if everything went as expected. When that didn’t happen and they rushed Knox to the NICU we were devastated. WE got our first glimpse at our future journey of the unexpected.
Initially the NICU doctors told us we would be able to go home within a week or two when Knox became stable. Shortly they learned that Knox was not a normal child; for the doctors his case was unexpected.
After a few days Knox was transferred to Cooks Children’s Hospital, the place we didn’t expect to be our new home over the course of our journey. Initially the doctors could not figure out what was wrong with Knox. They found it so unusual for a child to have so many complications for a small brain malformation. After observation in the NICU for 44 days and his first g-tube, we finally got to bring our sweet boy home. Little did we know once again we would meet the unexpected.
Within 36 hours Knox aspirated and Brooke had to give him CPR to save his life. We were right back to our new home at Cook Children’s only this time a new fear of the unexpected. At this point everything began to change. When we arrived back at Cook Children’s, Knox started having seizures. He was not quite the same and showed way more discomfort and irritability. At this time the doctors put Knox on multiple medications that we thought were making him comfortable. After spending another month in the NICU, once again we were able to take our sweet boy home with us. Only this time it was completely different. The NICU doctors told us Knox wasn’t going to live longer than 4 months old. We were discharged on hospice being told to enjoy our last few weeks with our baby boy.
During that stay, as a last hope, the doctors decided to get us involved with a geneticist to perform a whole exome sequence test to see if there was a possible genetic disorder causing Knox’s complications. In July, we received the results of our test, this is when we learned of Knox’s ADNP genetic mutation. A syndrome only discovered a few years earlier, a syndrome that at the time of Knox's diagnosis, only had 75 kids, we are currently (July 2018) at 165. A syndrome that doctors do not know anything about, a syndrome you could say is unexpected.
Six month went by, and Knox graduated off of hospice. He started to show his doctors the unexpected. At this time we started getting Knox all the proper specialists, therapists, and the team that was going to help us give him the best life possible. In March of 2017 we were admitted to Cook Children’s again when Knox got RSV. When Knox came home within 2 weeks we felt as he showed the world one more time the unexpected.
Throughout the next year Knox continued to impress his doctors and had constant therapies to increase his quality of life. We were going to Cook Children’s at least once a week between medications and doctors appointments. Throughout this time period we were beyond proud of the accomplishments our baby boy was making. And that brings us to our most recent hospitalization in June, where Knox impressed us once again when we only had to stay at Cook Children’s for 6 days. We really felt as if we were starting to have a good grasp on the unexpected.
Four days after we got home on July 3rd, Knox peacefully passed away at home. Where you could once again say he showed us the unexpected. So I would understand if you said our entire journey has been unexpected.
But Knox taught me to see the other side of unexpected. Knox taught me to fight no matter what the odds are against you. He taught me that it is easy to go above the expected because you CAN accomplish the unexpected. Knox taught me the value of life, and how it is worth it to fight as hard as you can.
I was taught the unexpected side of courage by the ADNP Kids Research Foundation founder Sandra Sermone. She taught us that, only you as the parent know what is best for your child. That sometimes it is OK to tell a doctor that they do not know what they are talking about. When you stand up for your special needs child that you can give them the best life possible. You have shown us that when you dedicate your life to something, you can change the world. We admire everything you have done not only for us but for children with ADNP syndrome all over the world. What you have created is beyond phenomenal and we will forever be grateful for you and the rest of our ADNP family across the world. The amount of love, support and knowledge that everyone has shared with us has definitely helped increase the quality of Knox’s life. We love and thank you, you are making the world a better place.
I was shown the unexpected side of love by a woman named Mrs. Ethel Hall. Mrs. Hall was Knox’s home health nurse since we have been home from the NICU. She has been with us through the good and the bad. She showed us the passion she had for Knox. We did not feel that Mrs. Hall was a home health nurse, we felt like she was family. So I think you Mrs. Hall, for everything that you have done, you were a tremendous help to us, and you will always be in our family.
Lisa Watson, Jackie, Whitney, Dr. Keator, Lisa Patterson, Dr. Pearson, Mitchell, our ADNP family, and the staff at Cooks Children’s Hospital, thank you for showing us the unexpected side of love, support and care over our journey.
To Brooke’s dad Ren and my dad Rick, thank you for everything you have done over the past 2 years. You both have always helped us. You both have been supportive of me and both have influenced me to be a better father. I met the unexpected side of fatherhood, and you both were there to help me through it.
To my mom Susan and Brooke’s step mom Betty, thank you for being there to help Brooke through the unexpected side of motherhood.
To our best friends Sam and Siobhan, thank you for showing Brooke and I the unexpected side of friendship. You loved us and gave us someone to lean on when we needed it most. Siobhan, I am sorry for what you had to go through. Despite the feelings everyone is encountering, I know you did your absolute best. We love you. When you become a doctor, I know you will be a great doctor because you have experienced the unexpected. We have all been through a lot these past couple of years and we will always love the two of you.
Justin, thank you for being there for both of us. We knew we could always call you to escape and have a smile put on our face.
To all of the nurses who did not pull Knox’s g-tube out, thank you so much, we never felt it was that hard.
There is one person that taught me how to love and enjoy the unexpected. Brooke. The amount of strength that you show every single day, inspires me every single day, and it will continue to do so for the rest of my life. You gave Knox the best quality of life he could have possibly had in the 2 years, 4 months and 19 days that he was here. You were there every single day. When you wanted to quit, you never did. When it seemed like we should give up, you fought harder. You were there for the absolute worst and the absolute best. You not only saved Knox’s life, you gave him the most comfortable life possible, you pushed him to his potential and you do the same for me. You are my reason to do better and it will forever be that way. You showed the world how strong our baby boy was when the doctors doubted him. You showed the world how strong you were, when nobody thought we could give him the quality of life that you gave him. I know how hard this has been, but I want you to know that you will always be a great mother. Nothing will take away from our experience and I will love you forever and always.
To everyone else who has been there for us through the unexpected, thank you.
To our sweet baby boy Knox Stewart English;
Your mommy and daddy love you beyond belief. You are our ADNP cupid. We know that you fought as yard as you could. We know that is was tough fight. As hard as this has been, we understand. We know that you are comfortable. We know that there is no more pain. We know that you will always be with us. When the unexpected in life happens, we know that you will be there. The strength you have given us will last forever. We will never forget you. We will always have you with us, like when we gave up on going to see fireworks on the 4th of July, so we went to the top of Cook Children’s and you gave us the perfect show. Thank you baby boy for making us better people. We will always carry you in our arms. You are gone physically but we know that you will always be with us. When we saw you yesterday, we knew that you were finally comfortable. Nothing can take away the pain of never being able to hold you again, but nothing can take away the memories of you in our heart. You touched the lives of so many people, and the affect you’ve had on us will continue your unexpected legacy. We know that you are running around and playing with your grandma for the first time and your ADNP brother Vid is there to comfort you as well. We miss you, and we will love you forever. We know that you are comfortable sweet boy and may you rest that way forever.
Unexpected; a word used as an adjective, meaning not expected or regarded as likely to happen. So you could say that having a flat tire on the way to work is unexpected. Getting a paycheck without having to go to work is unexpected. At this point as sad as it is to say, the Cowboys winning the Superbowl anytime soon is unexpected.
Over the past 2.5 years our journey really taught me about the unexpected.
On February 14, 2016 I can still remember the morning that our precious baby boy changed our lives. The nurse that morning told Brooke and I that I would be able to cut the umbilical cord when Knox arrived if everything went as expected. When that didn’t happen and they rushed Knox to the NICU we were devastated. WE got our first glimpse at our future journey of the unexpected.
Initially the NICU doctors told us we would be able to go home within a week or two when Knox became stable. Shortly they learned that Knox was not a normal child; for the doctors his case was unexpected.
After a few days Knox was transferred to Cooks Children’s Hospital, the place we didn’t expect to be our new home over the course of our journey. Initially the doctors could not figure out what was wrong with Knox. They found it so unusual for a child to have so many complications for a small brain malformation. After observation in the NICU for 44 days and his first g-tube, we finally got to bring our sweet boy home. Little did we know once again we would meet the unexpected.
Within 36 hours Knox aspirated and Brooke had to give him CPR to save his life. We were right back to our new home at Cook Children’s only this time a new fear of the unexpected. At this point everything began to change. When we arrived back at Cook Children’s, Knox started having seizures. He was not quite the same and showed way more discomfort and irritability. At this time the doctors put Knox on multiple medications that we thought were making him comfortable. After spending another month in the NICU, once again we were able to take our sweet boy home with us. Only this time it was completely different. The NICU doctors told us Knox wasn’t going to live longer than 4 months old. We were discharged on hospice being told to enjoy our last few weeks with our baby boy.
During that stay, as a last hope, the doctors decided to get us involved with a geneticist to perform a whole exome sequence test to see if there was a possible genetic disorder causing Knox’s complications. In July, we received the results of our test, this is when we learned of Knox’s ADNP genetic mutation. A syndrome only discovered a few years earlier, a syndrome that at the time of Knox's diagnosis, only had 75 kids, we are currently (July 2018) at 165. A syndrome that doctors do not know anything about, a syndrome you could say is unexpected.
Six month went by, and Knox graduated off of hospice. He started to show his doctors the unexpected. At this time we started getting Knox all the proper specialists, therapists, and the team that was going to help us give him the best life possible. In March of 2017 we were admitted to Cook Children’s again when Knox got RSV. When Knox came home within 2 weeks we felt as he showed the world one more time the unexpected.
Throughout the next year Knox continued to impress his doctors and had constant therapies to increase his quality of life. We were going to Cook Children’s at least once a week between medications and doctors appointments. Throughout this time period we were beyond proud of the accomplishments our baby boy was making. And that brings us to our most recent hospitalization in June, where Knox impressed us once again when we only had to stay at Cook Children’s for 6 days. We really felt as if we were starting to have a good grasp on the unexpected.
Four days after we got home on July 3rd, Knox peacefully passed away at home. Where you could once again say he showed us the unexpected. So I would understand if you said our entire journey has been unexpected.
But Knox taught me to see the other side of unexpected. Knox taught me to fight no matter what the odds are against you. He taught me that it is easy to go above the expected because you CAN accomplish the unexpected. Knox taught me the value of life, and how it is worth it to fight as hard as you can.
I was taught the unexpected side of courage by the ADNP Kids Research Foundation founder Sandra Sermone. She taught us that, only you as the parent know what is best for your child. That sometimes it is OK to tell a doctor that they do not know what they are talking about. When you stand up for your special needs child that you can give them the best life possible. You have shown us that when you dedicate your life to something, you can change the world. We admire everything you have done not only for us but for children with ADNP syndrome all over the world. What you have created is beyond phenomenal and we will forever be grateful for you and the rest of our ADNP family across the world. The amount of love, support and knowledge that everyone has shared with us has definitely helped increase the quality of Knox’s life. We love and thank you, you are making the world a better place.
I was shown the unexpected side of love by a woman named Mrs. Ethel Hall. Mrs. Hall was Knox’s home health nurse since we have been home from the NICU. She has been with us through the good and the bad. She showed us the passion she had for Knox. We did not feel that Mrs. Hall was a home health nurse, we felt like she was family. So I think you Mrs. Hall, for everything that you have done, you were a tremendous help to us, and you will always be in our family.
Lisa Watson, Jackie, Whitney, Dr. Keator, Lisa Patterson, Dr. Pearson, Mitchell, our ADNP family, and the staff at Cooks Children’s Hospital, thank you for showing us the unexpected side of love, support and care over our journey.
To Brooke’s dad Ren and my dad Rick, thank you for everything you have done over the past 2 years. You both have always helped us. You both have been supportive of me and both have influenced me to be a better father. I met the unexpected side of fatherhood, and you both were there to help me through it.
To my mom Susan and Brooke’s step mom Betty, thank you for being there to help Brooke through the unexpected side of motherhood.
To our best friends Sam and Siobhan, thank you for showing Brooke and I the unexpected side of friendship. You loved us and gave us someone to lean on when we needed it most. Siobhan, I am sorry for what you had to go through. Despite the feelings everyone is encountering, I know you did your absolute best. We love you. When you become a doctor, I know you will be a great doctor because you have experienced the unexpected. We have all been through a lot these past couple of years and we will always love the two of you.
Justin, thank you for being there for both of us. We knew we could always call you to escape and have a smile put on our face.
To all of the nurses who did not pull Knox’s g-tube out, thank you so much, we never felt it was that hard.
There is one person that taught me how to love and enjoy the unexpected. Brooke. The amount of strength that you show every single day, inspires me every single day, and it will continue to do so for the rest of my life. You gave Knox the best quality of life he could have possibly had in the 2 years, 4 months and 19 days that he was here. You were there every single day. When you wanted to quit, you never did. When it seemed like we should give up, you fought harder. You were there for the absolute worst and the absolute best. You not only saved Knox’s life, you gave him the most comfortable life possible, you pushed him to his potential and you do the same for me. You are my reason to do better and it will forever be that way. You showed the world how strong our baby boy was when the doctors doubted him. You showed the world how strong you were, when nobody thought we could give him the quality of life that you gave him. I know how hard this has been, but I want you to know that you will always be a great mother. Nothing will take away from our experience and I will love you forever and always.
To everyone else who has been there for us through the unexpected, thank you.
To our sweet baby boy Knox Stewart English;
Your mommy and daddy love you beyond belief. You are our ADNP cupid. We know that you fought as yard as you could. We know that is was tough fight. As hard as this has been, we understand. We know that you are comfortable. We know that there is no more pain. We know that you will always be with us. When the unexpected in life happens, we know that you will be there. The strength you have given us will last forever. We will never forget you. We will always have you with us, like when we gave up on going to see fireworks on the 4th of July, so we went to the top of Cook Children’s and you gave us the perfect show. Thank you baby boy for making us better people. We will always carry you in our arms. You are gone physically but we know that you will always be with us. When we saw you yesterday, we knew that you were finally comfortable. Nothing can take away the pain of never being able to hold you again, but nothing can take away the memories of you in our heart. You touched the lives of so many people, and the affect you’ve had on us will continue your unexpected legacy. We know that you are running around and playing with your grandma for the first time and your ADNP brother Vid is there to comfort you as well. We miss you, and we will love you forever. We know that you are comfortable sweet boy and may you rest that way forever.
